Sunday, August 26, 2012

The Rhetoric Around Carly Fleischmann

To all readers who are unaware, the phrase “intellectual disability(ies)” refers to the condition formerly known clinically as “mental retardation”, which is defined as having an officially tested IQ under 70.

Attention people of the world—there is an issue here that needs to be discussed and publicly. There is a video that is (re)surfacing about Carly Fleischmann, a young non-speaking Autistic woman who at the age of 11 showed her family that she was able to communicate in the English language by using a computer and later, if memory serves, an iPad. This is awesome. Augmentative and Alternative Communication (AAC) is something that needs to be talked about more, to be more widely researched, and to be more widely propagated. This is a distinctly good thing that has arisen from Carly’s story.

The not so good thing is how it’s propagated in the media. The title of the particular link that I see everywhere is “Girl who was Thought to be Mentally Retarded Finds her Voice.” I am truly glad that Carly found a way to communicate to the speaking world. I am likewise glad that her abilities, which had been profoundly underestimated because of ableism, are being recognized. These are the sorts of things that Autistic activists live to see and want for all of our fellow Autistics. We fight for this every day.

My issue is this—the way this video and the media in general frame Carly’s story gives me the distinct impression that most people’s thought process goes a bit like this—“Oh, she’s not retarded. How awful it must have been for her to be undervalued as one of them.” Essentially, that she was wrongfully undervalued because everyone thought that she had an intellectual disability, but now that she has shown that she does not have an intellectual disability, she is considered more deserving of human dignity than before.

I want you to pause and think about the ableism inherent to that whole piece of discourse.  The way that everyone frames this story only serves to reinforce the idea that people with intellectual disabilities are not valuable people and that in order to be considered a valuable person Carly had to demonstrate that she did not have an intellectual disability. In fact, it reminds me of this video where Amanda Baggs explains this whole issue much more eloquently.

Yes, Autistics who cannot consistently speak should have access to AAC so that they can navigate the world. It’s terrific that Carly got that. But that didn’t make her a more valuable person once this metaphorical Schrödinger’s Box was opened and showed that the cat wasn’t intellectually disabled. The lesson here shouldn’t be “don’t undervalue people who might have intellectual disabilities because you don’t know if they are actually of average ‘intelligence’ and therefore valuable.” Rather, we should recognize that all people have value, regardless of their intelligence. The fact that the former seems to be the lesson, the fact that “not a retard” is considered a compliment, says absolutely nothing good and everything bad about this society.

Friday, August 24, 2012

Why Trying to be Normal is Positively the Worst Idea Ever

Okay, so this blog has not been put to use in years, but I figure now is as good of a time as any to post here, so here you go.

All right.  So...

To preface the content of this post, a life update and a geography lesson of sorts is in order.  I live in New York City, I'm still Autistic, still an Existentialist, and I work in a Real Job (TM) now.  Also, New York City is a lot to deal with some times.  I mean, a lot to deal with.  Anyone who knows NYC at all knows that there are five boroughs (sometimes spelled "boros") and the borough that everyone thinks of when they think of New York City is Manhattan.  Manhattan is bright lights and yellow taxis (making yellow car here the most horrific/awesome thing ever) and marquises and sections of town that look identical at 2 AM and 2 PM (non-New Yorkers think I'm kidding about this).

Manhattan is also loud.  It's really loud.  Those yellow taxis that are the embodiment of all of the charm of New York City are also the worst sensory offenders in the universe.  You see, those taxis often don't have their brakes in particularly good repair because fixing brakes costs money and city driving is hard on brakes, so a red light on Sixth Ave. is literally audible because all of those brakes start squealing at exactly the same time.  Taxi drivers also tend to be the angriest drivers on the street because, hey, driving in Manhattan is stressful.  In fact, it is so stressful that I refuse to do it if I can at all help it.  However, stressed out drivers like to honk their horns.  A lot.  And those horns are loud, especially considering that, for being outside, Manhattan is a pretty live area acoustically.  Then there is the ambient noise pollution of the city, the sounds of subways rushing underneath your feat, people talking really loudly (and brightly too), and people who think that the whole world wants to be subjected to their awful music or even just their awful music's bassline.

Now, despite this horrific picture that I've built up of Manhattan, it's usually fairly tolerable as long as one avoids certain parts of town (any place between 30th st. and 50th st. should be ventured to at your own risk) and avoids staying on avenues (the wide north-south roads that contain most of the traffic) for too long.  It's still rough, but, like that one co-worker you have, it's manageable.

Or rather, it's manageable if you are running with a standard spoon reserve.  However, ideal situations are generally rare and I don't always find myself in Manhattan with a high balance showing in my spoon checking account or just can't find the spoon ATM (whatever that means in this metaphor).  So then I have to brave the streets of New York, the subway systems, and the everything in a way that leaves me unduly exhausted and emotional.  It's not a good scene.

So that was the situation tonight.  I was in Manhattan and got into a super-upsetting conversation with someone and ended up severely short-spooned.  In fact, I was so short-spooned that I refused to take the subway, which was too noisy and crowded for me tonight.  Instead I opted to take the Long Island Railroad (LIRR).  However, there is a slight trade off here: while the LIRR is much more sensory friendly than the subway, there is only one stop at 34th st., meaning that I had to walk uptown from where I was at 13th st. and I could not avoid spending some quality time on an avenue.  Everything went okay for a while, but eventually, the noise of the avenue got to me and I took refuge inside an open door, which happened to be the door to a CVS pharmacy.

While in the pharmacy, I got the idea to buy earplugs.  I've had this idea before, but for some reason never acted on it.  While a number of factors were at play, I suspect that some notion that "I have to function as much like a normal person as I possibly can" was a major part of it.  However, the situation was bad enough that I decided that I was over it and I wanted earplugs.  After spending some time looking for them (as finding things in stores is hard), I managed to get a pack (along with a drink), jam that shit into my ears, and set off for the train station.

The difference was staggering.  Truly.  I was in disbelief that making this one sensory accommodation which any person with five dollars and the right to enter a pharmacy can acquire could possibly make such a difference.  Yes, I was still frazzled.  Yes, taxi brakes and car horns and sirens still hurt, but they were (again) manageable.  I made it to Penn Station, took my train, got a cab, and made it home without being auditorily assaulted by the machinations of this commercial municipality.

So what is the moral of this story?  Well, part of the reason that I didn't get earplugs for the longest time was this notion that I should attempt to be as normal as possible.  It wasn't conscious, but I think that I kind of felt like it was a failing on my part that I couldn't handle it like everyone else does.  Even though anyone who knows me knows that I am not ashamed of my neurology, this aspect of internalized ableism prevented me from making the a major portion of my city greatly more accessible to me.  So fellow Autistics, please take advice from my experience weathered mouth (I say this slightly tongue-in-cheek): if something that minor is going to make that big of a change, it's probably worth doing and you will probably be in equal disbelief at how much it helps.

But, more importantly, to parents, guardians, teachers, friends, families, pet iguanas, parrots, maids, butlers, employers, and acquaintances of Autistics, you bear the burden of making this aspect of internalized ableism, if not a non-issue, then at least as small of an issue as is humanly possible.  Encourage your Autistic child/student/friend/relative/master/employer/employee/acquaintance to do these things and create an environment where no shame is attached to doing these things.  Teach them that it is okay and even good for them to live Autistically rather than imposing this idea on them that they need to live normally.  Remember the goal is to "get the job done", so to speak.  Attempting to get the job done "normally" will often result in the metaphorical job not getting done and almost always in a great deal of unnecessary strife.